The Ultimate Guide To Living With Breast Cancer
Living as a Breast Cancer Survivor
The Ultimate Guide To Living With Breast Cancer: Whether you are living with cancer or living after cancer, many women have questions and concerns about life as a survivor.
Follow up Care After Breast Cancer Treatment:
Many women are relieved or excited to be finished with breast cancer treatment. But it can also be a time of worry for women who fear their cancer could come back, or who feel lost without the same level of care from their cancer care team.
Even after you have completed breast cancer treatment, your doctors will want to watch you closely. It’s very important to go to all of your follow-up appointments. During these visits, your doctors will ask if you are having any problems and may do exams and lab tests or imaging tests to look for signs of cancer or treatment side effects.
Almost any cancer treatment can have side effects. Some might only last for a few days or weeks, but others might last a long time. Some side effects might not even show up until years after you have finished treatment. Visits with your doctor are a good time for you to ask questions and talk about any changes or problems you notice or concerns you have.
Typical follow-up schedules
- Doctor visits: At first, your follow-up doctor visits will probably be scheduled for every few months. The longer you have been free of cancer, the less often the appointments are needed. After 5 years, they are typically done about once a year.
- Mammograms: If you had breast-conserving surgery, you will get a mammogram about 6 months after surgery and radiation are completed, and then at least every year after that. If you had a mastectomy you will still need to have yearly mammograms on the remaining breast.
- Pelvic exams: If you are taking either of the hormone drugs tamoxifen or toremifene and still have your uterus, you should have pelvic exams every year because these drugs can increase your risk of uterine cancer. This risk is highest in women who have gone through menopause. Be sure to tell your doctor right away about any unusual vaginal bleeding, such as vaginal bleeding or spotting after menopause, bleeding or spotting between periods, or a change in your periods. Although this is usually caused by something that isn’t cancer, it can also be the first sign of uterine cancer.
- Bone density tests: If you are taking an aromatase inhibitor (anastrozole, letrozole, or exemestane) for early stage breast cancer, or if you go through menopause as a result of treatment, your doctor will want to monitor your bone health and may consider testing your bone density.
- Other tests: Other tests such as blood tests and imaging tests (like bone scans and chest x-rays) are not a standard part of follow-up because they haven’t been shown to help a woman treated for breast cancer live longer. But they might be done if you have symptoms or physical exam findings that suggest that the cancer might have come back. These and other tests may also be done as part of evaluating new treatments by clinical trials.
If symptoms, exams, or tests suggest a possible recurrence of your cancer, imaging tests such as an x-ray, CT scan, PET scan, MRI scan, bone scan, and/or a biopsy may be done. Your doctor may also look for circulating tumor cells in the blood or measure levels of blood tumor markers such as CA-15-3, CA 27-29, or CEA. The blood levels of tumor markers go up in some women if their cancer has spread to bones or other organs such as the liver. They are not elevated in all women with recurrence, so they aren't always helpful. If they are elevated, your doctor might use them to monitor the results of therapy.
It’s important to know that women who have had breast cancer can also still get other types of cancer. In fact, women who have had breast cancer are at higher risk for certain other cancers. Because of this, it’s important to follow the American Cancer Society guidelines for the early detection of cancer, such as those for colorectal cancer and cervical cancer. To learn more about the risks of second cancers and what you can do about them, see our page on second cancers after breast cancer.
Ask your doctor for a survivorship care plan
Talk with your doctor about developing a survivorship care plan for you. This plan might include:
- A suggested schedule for follow-up exams and tests
- A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment
- A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
- Diet and physical activity suggestions
If the cancer comes back
If cancer does recur, your treatment options will depend on where it comes back, what treatments you've had before, and your current health and preferences. For more information on how recurrent cancer is treated, see our section on breast cancer recurrence.
Can I Lower My Risk of Breast Cancer Progressing or Coming Back?
If you have (or have had) breast cancer, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Fortunately, breast cancer is one of the best studied types of cancer in this regard, and research has shown there are some things you can do that might be helpful.
Staying as healthy as possible is more important than ever after breast cancer treatment. Controlling your weight, exercising, and eating right may help you lower your risk of your breast cancer coming back, and may help protect you from other health problems.
Getting to a healthy weight
If you have had breast cancer, getting to and staying at a healthy weight might help lower your risk. A lot of research suggests that being overweight or obese (very overweight) raises the risk of breast cancer coming back. It has also been linked with a higher risk of getting lymphedema, as well as a higher risk of dying from breast cancer.
However, there is less research to show whether losing weight during or after treatment can actually lower the risk of breast cancer coming back. Large studies are now looking at this issue. This is complicated by the fact that many women gain weight (without trying) during breast cancer treatment, which itself might increase risk.
Of course, for women who are overweight, getting to a healthy weight can also have other health benefits. For example, weight loss has been shown to improve quality of life and physical functioning among overweight breast cancer survivors. Getting to a healthy weight might also lower your risk of getting some other cancers (including a new breast cancer), as well as some other chronic diseases.
Because of the possible health benefits of losing weight, many health care providers now encourage women who are overweight to get to and stay at a healthy weight. Still, it’s important to discuss this with your doctor before trying to lose weight, especially if you are still getting treatment or have just finished it. Your health care team can help you create a plan to lose weight safely.
Being physically active
Among breast cancer survivors, studies have found a consistent link between physical activity and a lower risk of breast cancer coming back and of dying from breast cancer. Physical activity has also been linked to improvements in quality of life, physical functioning, and fewer fatigue symptoms.
It’s not clear exactly how much activity might be needed, but more seems to be better. More vigorous activity may also be more helpful than less vigorous activity. But further studies are needed to follow up on these findings.
Some people used to think that breast cancer survivors with lymphedema should avoid certain arm exercises and vigorous activities. But studies have found that such physical activity is safe. In fact, it might actually lower the risk of lymphedema, or improve lymphedema for women who already have it.
As with other types of lifestyle changes, it’s important to talk with your treatment team before starting a new physical activity program. This will likely include meeting with a physical therapist as well. Your team can help you plan a program that can be both safe and effective for you.
Eating a healthy diet
Most research on possible links between diet and the risk of breast cancer coming back has looked at broad dietary patterns, rather than specific foods. In general, it’s not clear if eating any specific type of diet can help lower your risk of breast cancer coming back. Studies have found that breast cancer survivors who eat diets high in vegetables, fruits, whole grains, chicken, and fish tend to live longer than those who eat diets that have more refined sugars, fats, red meats (such as beef, pork, and lamb), and processed meats (such as bacon, sausage, luncheon meats, and hot dogs). But it’s not clear if this is due to effects on breast cancer or possibly to other health benefits of eating a healthy diet.
Two large studies (known as WINS and WHEL) have looked at the effects of lowering fat intake after being diagnosed with early stage breast cancer. One study found that women on a low-fat diet had a small reduction in the risk of cancer coming back, but these women had also lost weight as a result of their diet, which might have affected the results. The other study did not find a link between a diet low in fat and the risk of cancer coming back.
Many women have questions about whether soy products are safe to eat after a diagnosis of breast cancer. Soy foods are rich sources of compounds called isoflavones that can have estrogen-like properties in the body. However, some recent large studies have not found that soy food intake affects breast cancer coming back or survival rates. While eating soy foods doesn’t seem to pose a risk, the evidence regarding the effects of taking soy or isoflavone supplements is not as clear.
While the links between specific types of diets and breast cancer coming back are not certain, there are clearly health benefits to eating well. For example, diets that are rich in plant sources are often an important part of getting to and staying at a healthy weight. Eating a healthy diet can also help lower your risk for some other health problems, such as heart disease and diabetes.
Women often want to know if there are any dietary or nutritional supplements they can take to help lower their risk. So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of breast cancer progressing or coming back. This doesn’t mean that none will help, but it’s important to know that none have been proven to do so.
Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you're thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.
It’s clear that alcohol – even as little as a few drinks a week – increases a woman’s risk of getting breast cancer. But whether alcohol affects the risk of breast cancer coming back is not as clear. Drinking alcohol can raise the levels of estrogen in the body, which in theory could increase the risk of breast cancer coming back. But there is no strong evidence from studies to support this.
As part of its guidelines on nutrition and physical activity for cancer prevention, the American Cancer Society recommends that women who drink alcohol limit their intake to no more than 1 drink a day to help lower their risk of getting certain types of cancer (including breast cancer). But for women who have completed cancer treatment, the effects of alcohol on cancer recurrence risk are largely unknown. This issue is complicated by the fact that low to moderate alcohol use (1 drink a day or less) has been linked with a lower risk of heart disease.
Because this issue is complex, it’s important to discuss it with your health care team, taking into account your risk of breast cancer coming back (or getting a new breast cancer), your risk of heart disease, and your risk of other health issues linked to alcohol use.
Body Image and Sexuality After Breast Cancer:
Learning to be comfortable with your body during and after breast cancer treatment is a personal journey, one that is different for every woman. Information and support can help you cope with these changes over time.
Feeling good about your body during and after breast cancer treatment
Along with the emotional stress that cancer and its treatment can cause, many women with breast cancer also find themselves coping with changes in their appearance as a result of their treatment.
Some changes may be short term, such as hair loss. But even short-term changes can have a profound effect on how a woman feels about herself. A number of options are available to help you cope with hair loss, including wigs, hats, scarves, and other accessories. Alternatively, some women choose to use their baldness as a way to identify themselves as breast cancer survivors.
Other changes are more permanent, like the loss of part or all of a breast (or breasts) after surgery. Some women choose to have reconstructive surgery to rebuild the breast mound. If you decide not to have breast reconstruction, you can decide whether to wear a breast form or prosthesis or not.
Sexuality after breast cancer
You may have concerns about sexuality after breast cancer. Physical changes, especially after breast surgery, can make some women less comfortable with their bodies. There may be a loss of sensation in the affected breast. Other treatments for breast cancer, such as chemotherapy and hormone therapy, can change your hormone levels and may affect your sexual interest and/or response.
Relationship issues are also important. Your partner might worry about how to express love physically and emotionally after treatment, especially after surgery. But breast cancer can be a growth experience for couples – especially when partners take part in decision-making and go along to treatments.
To learn more, see Sexuality for the Woman with Cancer.
Finding help and support
Regardless of the changes you may experience, it's important to know that there is advice and support out there to help you cope with them. Speaking with your doctor or other members of your health care team is often a good starting point. There are also many support groups available, such as the American Cancer Society Reach To Recovery program. This program matches you up with a local volunteer who has had breast cancer. Your Reach To Recovery volunteer can answer many of your questions. She can give you suggestions, additional reading material, and advice. Remember that she's been there and will probably understand.
Some studies suggest that younger women tend to have more problems adjusting to the stresses of breast cancer and its treatment. It can feel socially isolating. Younger women might also be more affected by issues of sexuality or fertility. Some younger women might still be thinking about starting a family or having more children, and they might worry about how the cancer and its treatment might affect this. Others might have already started families and might worry about how they might be affected. Read More